Live and learn

GiGi’s Monona Drive storefront has an open play area and one-on-one rooms.

The discovery that a baby or fetus has Down syndrome, also known as trisomy 21, means that parenting will include special challenges. The genetic disorder causes various developmental delays and physical handicaps. But a new center on Madison’s east side provides community and support for families that include a child with Down syndrome.

GiGi’s Playhouse, 4104 Monona Drive, provides support and education for families. The original GiGi’s Playhouse was founded 13 years ago in Hoffman Estates, Illinois, by Nancy Gianni, whose daughter, GiGi, has Down syndrome. The Madison site opened in May 2016.

The mission of GiGi’s Playhouse is to educate and empower individuals living with Down syndrome but also to create greater community acceptance and awareness of the disorder.

Finding and training the right people takes time for the volunteer-staffed center. The Madison location is in the early stages with its programming, says site coordinator Julia Meyers.

All of GiGi’s programs are free, also open to siblings and cover a wide variety of ages.

Enrichment programs like LMNOP (Language, Music N’ Our Peeps) guide parents and infants through learning basic sign language while incorporating music and dance therapy. Leaps and Bounds focuses on large muscle development, social skills and language for preschoolers. And Teen Tastic is a social group with games and outings. The site also hosts special events, like a recent Winter Wonderland party. Programs on the docket for 2017 include a GiGi’s University, to prepare older adults for the transition to work life, and a one-on-one literacy program for younger participants.

GiGi’s is also a place for families who want to drop in just to talk, including parents who may be new to Down syndrome and want to learn more. Meyers says it is a great place to connect with other families, especially those who have already experienced Down syndrome in their lives

Jen Kruk, whose 1-year-old daughter, Lily, uses GiGi’s services, couldn’t be happier that the organization is right in her neighborhood.

“I love what they stand for,” says Kruk. “Not only do they know their audience, but they listen for feedback on how to make it better. [It’s] very personalized to the community’s needs.”

Kruk, who is also on the outreach committee, says that connecting with other parents whose children have Down syndrome is invaluable.

“I remember what is was like being pregnant and getting the confirmed diagnosis...and the inherent fear and uncertainty and different emotions that come with that. I’m eager to help connect parents with other parents who have been there, done that, as well as to other services too.”

Meyers and GiGi’s ambassador Claire Bible, who is living with Down syndrome, also do outreach together at local schools. Their mission is twofold: to connect with students with Down syndrome to tell them about a safe hangout, but also to enlist other students as volunteers, which they hope will create an even greater openness about Down syndrome.

“Getting youth involved is always a great thing,” says Bible. “I feel like it’s a great educational opportunity for them, because there are probably kids all through Madison that are in their schools with Down syndrome, and maybe they’ll open their eyes a little more, make a new friend, [and] educate themselves about the movement.”

Bible, who will graduate with her early childhood certificate from Madison College in May, has had a full life so far between various education institutions, involvement in AmeriCorps and advocating for disability rights.

“I’ve been busy,” says Bible. “But it also shows how potential never expires. It does not have a shelf life.”